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Initial validation of a needs instrument for young people bereaved by familial cancer

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Abstract

Objective

This study aimed to validate the Bereaved Cancer Needs Instrument (BCNI), an instrument designed to assess the unmet psychosocial needs of adolescents and young adults (AYAs, 12–25 years) who have experienced the death of a parent or sibling to cancer.

Methods

In total, 335 participants aged 12 to 25 (M = 15.80, SD = 3.32) who had experienced the death of a parent (N = 297) or sibling (N = 38) from cancer took part in this study. Participants completed the BCNI, the Kessler-10 psychological distress scale (K10), and several items assessing the acceptability of the BCNI.

Results

Exploratory factor analysis indicated that a seven-factor structure best fit the BCNI, accounting for 56.65% of the variance in unmet psychosocial needs of cancer-bereaved AYAs. The measure had good psychometric properties, high levels of internal consistency for all domains, and correlated strongly with the K10 (r = .59, p < .001). Item response theory analysis demonstrated that the response scale was appropriate, with strong discrimination indices. Analyses also indicated the potential to reduce the BCNI from 58 items to a 37-item short-form, although this will require further validation.

Conclusions

The BCNI is the first psychometrically validated instrument to identify the unmet psychosocial needs of bereaved AYAs who have experienced the death of a parent or sibling to cancer. The instrument can be used in research and health care settings to identify the unmet needs of young people bereaved by cancer and provide targeted support to reduce psychological distress.

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Notes

  1. The Australian Institute of Health and Welfare (2011) define AYAs to include those aged 12–24 years. Because CanTeen offers services up to 25 years of age, the AYA age group ranged from 12 to 25.

  2. CanTeen is the Australian organisation for young people living with cancer.

  3. The number of days since a parent or sibling death did not correlate significantly with the number of unmet psychosocial needs, r (309) = .05, p = .416.

  4. Values of 0.50–0.70 are considered mediocre, 0.70–0.80 is considered good, 0.80–0.90 is considered great, and values greater than 0.90 are considered superb.

  5. Floor or ceiling effects were only of concern if more than 15% of respondents attained the lowest or highest score on the BCNI (Terwee et al. 2007). In our sample, three participants achieved the lowest score of 58 and only 1 participant achieved the highest score of 232, accounting for 1.19% of the sample.

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Author information

Authors and Affiliations

  1. Research, Evaluation and Social Policy, CanTeen Australia, M: GPO Box 3821, Sydney, NSW, 2001, Australia

    Pandora Patterson, Fiona E. J. McDonald, Richard Tindle & Kimberley R. Allison

  2. Cancer Nursing Research Unit, The University of Sydney, PO Box M30, Missenden Road, Sydney, NSW, 2050, Australia

    Pandora Patterson & Fiona E. J. McDonald

  3. Pain Management Research Institute, Royal North Shore Hospital, Sydney, NSW, Australia

    Daniel S. J. Costa

  4. School of Psychology, University of Sydney, Sydney, NSW, Australia

    Daniel S. J. Costa

  5. School of Medicine, University of Sydney, Sydney, NSW, Australia

    Daniel S. J. Costa

  6. Faculty of Business, Justice, and Behavioural Sciences, School of Psychology, Charles Sturt University, Port Macquarie, NSW, 2444, Australia

    Richard Tindle

  7. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, 450 Brookline Ave, Boston, MA, 02215, USA

    Sue E. Morris

  8. Department of Psychiatry, Boston Children’s Hospital, Brigham and Women’s Hospital, Harvard Medical School, Boston, MA, 02215, USA

    Sue E. Morris

Authors
  1. Pandora Patterson
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Corresponding author

Correspondence to Pandora Patterson.

Ethics declarations

The CanTeen internal ethics committee approved the study (Approval No. CEC15.002).

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The authors declare that they have no conflicts of interest.

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Patterson, P., McDonald, F.E.J., Costa, D.S.J. et al. Initial validation of a needs instrument for young people bereaved by familial cancer. Support Care Cancer 28, 3637–3648 (2020). https://doi.org/10.1007/s00520-019-05104-5

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  • DOI: https://doi.org/10.1007/s00520-019-05104-5

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